The story of Beth Bowen

In 2007 Clare Bowen’s five-year-old daughter Beth died during surgery at a hospital in the UK. Here she tells her story to Sara Dawson – and relays her hopes that it will reduce the likelihood of such an incident happening again

I’m a mum to three small children who all have spherocytosis, which causes them to become very anaemic and require blood transfusions. The condition made my middle child William very poorly, so in January 2006 a decision was made to remove his spleen – it made a massive difference to his quality of life.

So the following July, we decided that Beth, my eldest daughter, would have the same operation – she had just started school and couldn’t keep up with the other children. We felt confident, as the same team that operated on William would be treating Beth. I remember talking with the doctors beforehand about possible scars on Beth’s tummy, so the spleen would be removed through a lower incision.

We had all the pre-op stuff done and chatted to all the doctors, before arriving at the hospital on 27 July. She went down for her operation at 1pm – we didn’t hear from the doctors for several hours. At 4pm we spoke to a nurse, asking her why it was taking longer than it should. The nurse said it was fine as these operations take a long time.

Just after 6pm, the surgeons, the anaesthetist and the nurses came into our tiny waiting room – without any warning they said something awful had happened. The doctors seemed unable to comprehend what had happened. I asked one doctor: “Is she dead?” He said “yes”, adding that she’d lost a lot of blood during the operation as a blood vessel had been cut and she hadn’t survived. He said they’d been trying to save her for an hour and half prior to coming to see us, but she hadn’t survived – she’d lost too much blood.

The immediate aftermath

In the weeks after Beth’s death we received no answers from the hospital – it was very difficult to get them to talk to us. Slowly we gathered bits of information. We found out that at the last minute a new piece of equipment was used called a morcellator – like an apple corer – that removes chunks of flesh through laparoscopic portholes. It emerged that the surgeons hadn’t used the equipment before, they hadn’t received any training and no risk assessments on the equipment had been undertaken. It was an adult piece of equipment that was not meant to be used on a child.

The damage to Beth’s body was extensive; they made cuts to her aorta, her stomach, her intestines – she had massive trauma to her body.

Searching for answers

It was only when we enlisted help from a friend with a medical background that we started asking questions that really needed asking.

Why did the hospital throw away all the equipment they used that night? Why didn’t they keep the blood that Beth lost? Why didn’t they try and retrieve the items when we’d asked them, even though they were still at the hospital? Everything that could have given us clear answers was disposed of immediately. It didn’t allow us to get the answers we so needed.

It surfaced that the surgeon who carried out Beth’s operation had only ever done three laparoscopic surgeries before – William had been her first. In her head she deemed it okay to try to operate that piece of equipment on my daughter.

Confusion

That was something we as parents could never understand – why would a doctor allow themselves to operate a new piece of equipment that they weren’t comfortable with, while their senior was in the room? I don’t think any of the surgeons understood that there was a technique to what they were doing, one that had to be learned.

They had no formal training on how to use the morcellator; a five-minute talk was judged to be enough training. The nurse who was asked to put the morcellator together had never seen it before. No-one felt they had the authority or the ability to halt the operation. If only someone in the theatre that day had said can we stop a minute, can we take a step back, we’ve had no training, we’ve not done a risk assessment, we’ve not really thought this through, is this a good idea?

The inquest

We did not receive an apology before or after the inquest. The hospital admitted they had failed in their duty of care and they were sorry that they had failed to prevent Beth’s death. They didn’t fail to prevent Beth’s death – they caused it.

The three-day inquest took place 18 months after Beth died. Unfortunately, the only way we could afford a solicitor was to take legal action against the hospital, which is something we never really wanted to do. For us it was never about money; it was about answers.

The only way I can describe the inquest from a parent’s point of view is that it’s like being tortured and you can’t escape. We had to listen to different stories about Beth’s last hours, while trying to fit it all together in our heads – it was horrible. Information that came out in the inquest was contrary to what the hospital had been telling us in the months previously.

Photographs were revealed of the theatre and information was shared on Beth’s medication, which she’d been given but we were unaware of. A trainee surgeon was the one specifically holding the morcellator – they had never used it before and she was not allowed to perform surgery on her own.

During the inquest the hospital admitted that they had not received consent from us to carry out the operation on Beth.

I left the inquest room while they showed pictures of Beth’s autopsy, but my husband Richard felt he had failed Beth by allowing the hospital to do the operation, so he remained in the room – the pictures destroyed him. No-one should have to see their child cut up on an autopsy table.

The striking thing during the inquest was the arrogance and complete disregard by the medical professionals in the room for our feelings, and for the part that they played in Beth’s death.

In the months after the inquest, Richard suffered a massive heart attack and died – he was only 31 years old.

On a national level

Beth’s death was reported widely in the media and the UK government became interested in what happened. The Health Select Committee1 started looking at many incidents where hospitals hadn’t been open and honest with parents and relatives after operations or treatment that had gone wrong.

The Committee published a report about the death of Beth. It generated a lot of dialogue and interest in the subject that wasn’t there before – it was a catalyst for change. That said, I do think there is still a long way to go.

The Committee came up with some good ideas for ways to drive things forward, but it’s not always about rules and making people do things; it’s about a change in culture. Bringing in a law to enforce open candour and openness is not necessarily the right way forward.

Reflections

Attitudes need to change. Some medical professionals are too arrogant to believe they can be any better and that they can make mistakes. With this attitude you blind yourself to mistakes, and you won’t see one heading straight for you.

Medical professionals should be confident in their ability, but they should understand their limitations – “I’m good, but I can be better”. Beth may still be alive if the surgical team’s mindset had been different going into the operation.

Change has to come from the top and the bottom – openness and candour must be championed by everyone but, ultimately, it is the board and the senior doctors who are the ones that need to facilitate the changes.

Junior doctors should feel empowered to stand up to cultures that threaten patient safety. They should be able to speak out and be supported by their seniors. They may not be correct all the time, but that should be okay – they shouldn’t be berated for being wrong; they should be rewarded for asking questions and having the courage to say “can we stop; can we check this is right?” Seniors should not view this as frustrating but as affording an opportunity to rethink what they are doing.

Learning to live again

I can’t do anything to bring my daughter back. My daughter has gone – I can’t do anything for her now; I can’t help her. But I can encourage doctors to be safer, to work as a team and to speak out. I want people to understand that once you’ve made a mistake or done something wrong, or been in a situation out of your control where something has gone dreadfully wrong, then you should be open and honest about what’s happened. Allow yourself to be found at fault because that is the only way that people can improve.

No-one can truly understand the pain of losing a child unless you’ve been there, but if you can think – even for a second – that you’re putting someone’s life at risk, stop and consider the pain that I feel every single day. Then I know you’ll do the right thing.

Commentary – Being open

By John Tiernan, MPS Executive Director, Member Engagement

Sadly things do go wrong in medicine. We can’t be totally confident about how frequently things go wrong, but they are not a rare occurrence.

For many years a culture of denial existed, where doctors were heroes who never have adverse outcomes. These expectations led patients to demand perfection and perceive adverse outcomes as unacceptable even when the literature suggests that as many as 50% are not avoidable. The fear of openness is often driven by a blame culture where the doctor is disproportionally singled out for sanction, regardless of the multifactorial causes of some of these events.

The real challenge is how to change this culture to one where we move from disproportionate blame to one of fair accountability or a just culture, where the emphasis is on learning from adverse events rather than finding someone to blame. The learning culture is balanced by the profession taking accountability when mistakes are made.

A good starting point is encouraging openness after an adverse event has occurred. When something has gone wrong be open and candid with the patient – it is part of the ongoing therapeutic relationship. Say sorry for what has happened and talk honestly with them – don’t run away or deny what’s happened. It isn’t always easy but it is the right thing to do.

Examining significant events and exploring adverse outcomes is not always an admission of bad practice – it is, however, an essential part of good practice.

Being open can also reduce the risk of complaints and claims. For many patients who have suffered an injury, turning to the law is often a last resort; patients go down this route because they feel it is the only way to have their questions answered.

There is a large amount of evidence that suggests that people lodge a complaint or a claim against a doctor, not primarily because of their injury, but because they’re angry at what happened and want answers.

Which is more professional? To refuse to acknowledge an adverse outcome and cling to the belief that you are incapable of having one, or to acknowledge it, manage it ethically and professionally and, most of all, learn from it?

Which sort of professional would you rather be treated by?

Opinion

"We’re moving from paternalism with patients – let the doctor tell you what’s right for you – to an openness and a patient partnering, where the patient not only has a right to know, but we want them to know."

"Don’t think we can become safer secretly. There’s some very inescapable connection between openness and honesty and disclosure and involvement, confession, apology... all acts of openness in building a safe culture. I think this idea of transparency and openness is an essential part of our future."

"Information about errors and adverse events, harmful outcomes in healthcare, has very seldom been studied openly; it’s been treated as a nuisance, something we don’t want to know about, an occasion for shame, guilt, and other sorts of problems. In the last few years in healthcare we’ve come to realise that it can also be – if treated properly – a resource, and an essential way of achieving a safe culture."

"When something goes wrong, you need to lose sleep over it. Why did it happen? Do I understand what happened here? Have I made sure that I know the reasons this happened? What can I do to prevent it? Have I said sorry to the patient? Have I involved the patient in this situation? Have I talked to staff? I think that’s a really important obligation of doctors."

Professor Mayur LakhaniGP and Chairman of the National Council for Palliative Care, UK

"Medical teams are human. Medical teams are driven to succeed and have the needs of the patient at heart. They need to be pre-occupied with the possibility that they will make errors. The team leaders, usually consultants, must understand that they will make mistakes and try to break rules in order to achieve results. The safety net is their team who must trap or mitigate the consequences of such errors or violations. Research shows that if the leader briefs the team in an open, interactive and inclusive manner then team members will speak up in an assertive manner when the situation demands."

Note to non-UK readers: the Health Select Committee is part of the UK parliament, and oversees the operations of the UK Department of Health. Here is a link to the Health Select Committee report – www.publications.parliament.uk

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